My Nonprofit Reviews
Review for Patient Alliance Neuroendocrineimmu Disorders Org For Research & Adv Inc, Traverse City, MI, USA
As a patient with ME/CFS, I am immensely grateful to PANDORA ORG for all their amazing advocacy work. Without organizations like them, we will never get the proper funding for biomedical ME/CFS research or the health care that the ME/CFS patient community so desperately needs.
ME/CFS is a severely debilitating neuroimmune disease which has been overlooked by the public authorities for decades. Change is needed, and PANDORA helps bring it around.
Review for The Cfids Association Of America, Inc., Charlotte, NC, USA
For me, as an ME/CFS patient, the CFIDS Association of America represents hope. In the ME/CFS community, we have very little to feel hopeful about. The public institutes are spending pocket money on ME/CFS research and are doing very little in the area of education and awareness (sometimes rather messing things up than clearing them up). While we need to keep advocating for change in the public bodies, at this point in time we need to rely on other actors such as the CAA. In the past decade I have seen the CAA fund some of the most important biomedical ME/CFS research, such as the Stevens Protocol of exercise testing for ME/CFS and the research on gene expressions after exercise (Alan Light and Kathleen Light). Many of the projects they fund go on to recieve - the very hard to come by - public funding. I think the CAA is helping us move forward in a really difficult terrain.
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